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85 Comments
Kathy Brick
4/18/2012 05:11:49 am
Dr. Herbst,
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6/21/2012 12:31:18 am
I provided more information on my website. Hope that helps.
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Josh
1/10/2013 05:01:45 am
Dr. Herbst I have been trying to contact your office about setting up an appointment. I am from out of town and have seen two different doctors but have had no help. I just went thru my fourth surgery and am becoming scared on what to do. If I can not step up an appointment, I was wondering if I could see a specialist that you may know in Michigan. Anything will help. Thank you.
Kristi
12/5/2015 07:56:48 pm
Josh, I live in Michigan too and cannot seem to find any assistance. I was wondering if you ever found a doctor that can help with diagnosis and care? I'd appreciate any info. Hope you are well. 9/27/2016 07:00:15 pm
I have not seen this Dr., but found his name on another DD site. Kevin Hackshaw MD | Ohio State University Wexner Medical Center
Lisa Greenwood
5/8/2021 07:37:04 pm
Dr. Herbst,
Laraine Zady
5/18/2012 04:23:51 am
I am 55, female and have several lipomas that range from the size of a kiwi to a grapefruit size. I had 5 large painful ones removed last year that were all near my joints. I'm now developing a small one on the back of my neck and it is causing stiffness and pain in neck, shoulders and my head. Next week I plan to undergo, on the advice of my spine and arthritis doctors, Bariatric surgery. I am 100 pounds overweight with very heavy legs and arms. Small chest and waist. Has anyone heard of this helping?
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6/21/2012 12:33:37 am
Laraine Zady: I am wondering if you had bariatric surgery and how you are doing. Many people with Dercum's disease have had bariatric surgery with good weight loss but the lipomas stay behind and can continue to be painful.
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Renee Adams
12/3/2020 02:28:18 pm
Dr Herbst 6/21/2012 12:34:08 am
Laraine Zady:
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Heather Marie
9/24/2013 11:10:57 pm
My sister , who has Dercums , had bariatric surgery three years ago . Extremely successfull . It had definitely relieved some if the pain and she says the Dercums is now tolerable . I am hoping for the same . I have just been diagnosed with Dercums disease . There may be more than the two of us in the family with this ,
mary jane
3/23/2019 06:09:15 am
I want to share my experience on how I was
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Debbie
3/31/2019 04:32:15 pm
Yes, and yourself?
Hope Suggs
4/2/2019 01:26:40 am
Yes, last APRIL and My body has gone crazy.
Crystal
2/12/2020 08:46:22 am
Yes, in 2004 and less than a month later, my Dercums started.
Kathy methe
6/29/2021 03:44:13 pm
I was is a auto accident 1 year ago in may 2020. I have spiraled down with my lipedema since the accident with pain and decreased mobility. I recently started on LDN and i believe it starting to help. I'm currently taking 3mg. I took 1.5 mg for 1 week. This week im on 3 mg and after 7 days i will take 4.5 mg daily. But i can tell already that it is helping my pain and decreasing my inflammation. I've been able to cut my otc pain pills to daily rather than 3xdly. Im also taking several supplements including tumeric. I also developed lipomas in my legs after a d&c for hyperplasia brought my all the inflammation. It seems like since i started menopause its been never ending symptoms developing. Im now post menopause at age 66 and still cant aeem to get this lipedema under control. 5/9/2021 09:21:50 am
Lisa: Please call 310-882-5454 to see me.
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Xavier
8/25/2022 09:44:13 pm
Hey Lisa,
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5/28/2012 08:18:27 pm
Thank you for the blog, I will surely have close look at it. Please continue with regular updates.
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shayne owens
6/20/2012 04:22:26 pm
my name is shayne owens and am 28 years old, i had my first lipoma when i was 17 and when i was 21 i had around 8 of them that i had noticed, and was told they were just lipomas and harmless, over the last year they have begun growin more rapidly from my stomach to chest my arms and legs, I am an average size male, and these things are taking over my body. i have no insurance right now and am having a hard time getting any help from any doctor other than they are painless lipomas, yet they cause me discomfort and pain. Will you see me as a cash cient?
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6/21/2012 12:35:25 am
Shayne:
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Mark adler
11/22/2020 05:03:19 am
Same situation here. 1st lump age 27. Painless and rapid accumulation of lipomas. Some chron’s symptoms, early ,(49) cardiac disease, joint pain, memory/organizational deterioration
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Renee
12/3/2020 02:31:09 pm
Please provide a list of doctors on the East Coast that can help if you know anyone
Angela Utschig
10/2/2022 05:12:18 pm
Please direct me to this state list I am in Wisconsin and need to see someone familiar with dercum's
Brandy Page
7/11/2012 07:07:42 am
Dr. Herbst,
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Debbie
11/14/2016 06:23:53 pm
It sounds like Lyme's disease may be pathogenically related to DD as people with both diseases can have painful responses to natural and manmade EMF/EMR, ie. stormy weather, full/new moons, wireless and digital technology. We should pay attention to our surroundings when we go through a painful flare to see if there is this correlation. I believe it may be pathogens in our bodies that are reacting in response to EMF/EMR and creating the painful lumps.
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Jamie Sanza
6/10/2021 02:09:30 am
This sounds exactly like me
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Jo Baker
8/27/2012 02:02:23 am
Dr. Herbst,
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Dawn Brickhouse
1/20/2017 02:46:59 pm
Jo, I also live in Alabama. Did you ever find a doctor to help you? In January 2015 a doc in Pell City diagnosed me, then I went to see Dr. H in July 2015. Any help locally would be appreciated.
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Melanie Reber
9/8/2012 10:27:03 pm
Hello Dr. Herbst!
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Donna
5/22/2015 11:38:34 pm
Melanie, I am also wondering the same thing. Bartonella symptoms sound very similar to Dercums. How to tell the difference?
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Paula Apicella RN
11/12/2012 03:06:08 am
Hello Dr. Herbst,
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sheila gbade
3/1/2013 11:28:50 pm
If you find someone in Baltimore, please keep me in mind. I would love to connect with you and the physician as well. I am a CT Tech in DC. If I find a physician, I will definitely let you know.
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Paula Apicella RN
9/24/2013 11:41:11 pm
Sheila, did you have any luck finding a doctor near Baltimore? I'm still looking and researching along with calling Baltimore and Philadelphia doctors but no luck as of yet!
Ron Michels RN
4/21/2013 05:50:48 am
Have u found anyone, I am near Baltimore, my md of 20yrs gave me the boot, "they shouldn't hurt"- ?!
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Paula Apicella RN
9/24/2013 11:44:45 pm
Ron, my doctor had said the same thing, "you only have some lipomas, degenerative disc disease, a few bulging discs and you shouldn't be in as much pain as you claim". Whaaaaaatttt? Is he kidding me? I can't even move anymore! I must have hundreds of these so called lipomas that shouldn't hurt!!! 1/30/2017 04:41:42 am
I have a wonderful geneticist in Baltimore that diagnosed my Dercum's disease. Her name is Claire Francomano and her specialty is connective tissue disorders, which are related to Dercum's. Unfortunately, her wait list is 18 months, but she is well worth the wait.
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Mark adler
11/22/2020 05:15:41 am
Paula, remarkable similarities!
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Teresa Crisman
11/29/2012 01:39:41 pm
I wondered if you have a biopsy kit for mailing back to you for diagnosis? I would appreciate any info. I am unable to find a doctor or travel to California. My NP highly suspects DD, as do I. My symptoms match many you list. I have no known family with this same cluster of symptoms, but did grow up on an oil lease in the panhandle of Texas with exposure to crude oil/chemicals. I highly suspect this exposure to be significant in my disease process.
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Connie Ziesemer
12/15/2012 09:48:59 am
I am 62 and had been diagnosed with Fibromyalgia 22 years ago. I think I have Dercum's though with painful nodules the size of rice, peas and large size marbles in legs, bottom, stomach, under arms. Has anyone tried a cold lazer or infared sauna? Is there a site that tells about successful treatments - I will start the RAD diet and use all the suggestions on Dr Herbst treatment protocal for Lipedema, hoping this applies to Dercums. Any help would be great.
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Deanelle Payne
2/4/2013 05:14:16 am
I strongly suspect that I have Dercum’s but am having difficulty finding a doctor who can diagnose and I cannot get in to you until July 1st. I’m still suffering major bodily changes, including losing 15 lbs in two months while I continue to get bigger and thicker with increased pain and developed lipomas just from getting blood drawn. It is as if a switch was thrown on in May after being on a high dose of synthroid for a couple of months. I was only recently informed that my hypothyroidism was caused by Hashimoto’s. I’ve had hypothyroidism for 19 years but went off of synthroid for a few years because it made me not feel good. Note that my fibromyalgia symptoms were much better off of synthroid and were significantly worse when I was back on synthroid . My Drs. convinced me to go back on it, but prescribed twice the dose that I used to be on. I wonder if a sudden flood of synthetic thyroid in someone with an autoimmune disease that attacks thyroid has caused this. Have you seen connections between hashimoto’s or other autoimmune diseases and Dercum’s and is an autoimmune response suspected as a cause? If so, have any of your patients tried low-dose naltrexone (LDN) to regulate their immune system response? If I can ever get diagnosed, I would be interested in discussing possibly trying LDN. My daughter had great success with her Crohn’s.
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2/4/2013 10:12:34 am
A Dermatologist should be able to diagnose you. It does seem in a good number of cases that the immune system is linked to Dercum's disease and we can diagnose this by examining the fat and lymphatics. I have had a few people try low dose naltrexone but have not really heard that it is effective. It may not hurt to try. I also like manual lymphatic drainage and other meds.
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Deanelle Payne
2/4/2013 11:20:37 am
Any names of dermatologists in the midwest area that you are aware of who are familiar with RAD's and can diagnose? i contacted Dr. Hanke's office in Indianapolis (you mentioned his name in an article) and he said that he did not diagnose Dercum's. I'm in Illinois. I would still come to you to discuss treatment options. For peace of mind so I know that I'm not crazy and for work purposes, I would love to get a diagnosis asap. My newest... I woke up this morning with my lower armpits looking like a third of a softball sticking out. it just keeps progressing and the pain is getting worse, especially in my hips, wrists, and shoulders. I would appreciate any help pointing me in the right direction.
Paula Apicella RN
9/24/2013 11:48:37 pm
Dr. Herbst,
Paula Apicella RN
9/24/2013 11:48:49 pm
Dr. Herbst,
Paula Apicella RN
9/24/2013 11:49:14 pm
Dr. Herbst,
PaulaNewf
10/18/2013 02:41:53 am
My doctor says that a dermatologist only deals with the skin and these lumps are 'under the skin'. There's no doctor that specializes in 'lipomas' or bumps 'under the skin'. I've had several very painful lipomas removed over the past couple of years and the doctor says that I can only be diagnosed with 'lipomas', perhaps doctors haven't heard of Dercum's in Camada? The physican and the surgeon doesn't believe that the lipomas are painful, they think that I'm making it up.
S millow
2/19/2013 11:11:19 pm
Please send any info on diagnosing and living with dercums! I'm too embarrassed because I feel I brought this disease on by myself by gaining so much weight!
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Pamela Moseley
3/1/2013 11:01:30 pm
Dear Dr. Herbst,
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Sheila Gbade
3/1/2013 11:21:49 pm
Hi Dr Herbst,
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sccamping
4/5/2013 02:47:17 am
Desperate for a Doctor in South Carolina
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Stella Mercer
7/28/2014 05:36:18 am
Did you find a doc in SC ??
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B. Conover
5/3/2013 09:39:38 pm
I am getting desperate to find a doctor who can help me. I have classic lipedema ( I think Stage III) and have been misdiagnosed for YEARS, told to "just lose weight", told that I was just not handling pain well, been dropped by a doctor because he couldn't help me, told to do things that made the problems much worse. I am now 62, in constant pain. Walking any small distance (like shopping) is so difficult, climbing stairs is close to impossible. I work full time and weekends, but am totally fatigued, having increased mobility & pain issues, and my quality of life is diminishing. I must conserve energy to just get through the day. I wrap my legs and use made-to-order compression farow wraps, but after use, my legs are so painful I can barely touch them or wear slacks. I had double knee replacement two years ago, have had and need surgery again for herniated discs and now the lipo is spreading to my arms. I am on Coumadin due to PFO in my heart and atrial fib. I need to find a doctor in the Philadelphia/New Jersey who can help, but not only is there no one covered by my medical insurance, but I’ve had to give most doctors copies of information I’ve gathered on Lipedema, just to try to get some help (they appear to just be guessing how to help!) I cannot afford to go outside my HMO network to find help and my HMO is completely unsympathetic. HELP!! I need some suggestions. I feel I am becoming more isolated and depressed.
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L murphy
1/25/2015 10:40:10 am
Read your post. I am working with a doctor in wilmington delaware who has trained in lipedema wal surgery with dr. Stutz. He accepts insurance and is a vascular surgeon. If you join one of the private lippy fb groups, such as lipedema sisters usa or liposuction for lipedema, i will post when he is starting. He has scheduled his first lippy wal patient for next month.
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B. Conover
1/26/2015 01:25:31 am
Thank you, L murphy, for the heads up. Unfortunately, I am still on an HMO who doesn't cover outside of NJ. I would like to learn more about this, tho. Since my initial post, I became a patient of Dr. Herbst and have traveled to AZ twice for care, (although not covered by insurance). She is wonderful and my primary is working with her suggestions. Please feel free to contact me at breathedeeeep@yahoo.com.
Joyce White
7/2/2013 10:26:45 pm
Hi Dr. Herbst,
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Melanie Early
10/4/2013 01:41:06 am
Hi,
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10/28/2013 04:22:38 pm
A very fair doctrine furthermore excellent blog.
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5/14/2014 01:41:43 pm
A lot of thanks for the great post C I’d fun reading it! That i really like this weblog.
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Shannon S
4/26/2016 10:29:11 pm
It pains me terribly to read through these comments and see the stories of suffering, from lack of insurance to uninformed medical professionals and the overall frustration from not getting adequate care. I am glad that there are persons such as Dr. Herbst who do care and want to make a difference in the lives of persons with disorders that so many have NEVER heard of! It inspires me to attend medical school so that I can help persons in this situation. Maybe I am an idealist, but as a person living with peripheral lipedema (still undiagnosed), chronic pain, digestive issues and depression, I know how uncomfortable it feels, how the despair can overtake ones life. I am at a point where I would almost trade bologna sandwiches in exchange for offering services if I was a physician (and yes, I know I am a bit crazy ;-) )
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5/1/2016 03:32:11 am
Thanks for your post. I’ve been thinking about writing a very comparable post over the last couple of weeks, I’ll probably keep it short and sweet and link to this instead if that's cool
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5/3/2016 04:11:47 am
your work and wondering how you managed this blog so well. It’s so remarkable that I can't afford to not go through this valuable information whenever I surf the internet
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Steve Tinsman
9/26/2016 06:57:26 am
Dr. Hearbst you dx my wife Tammi with dercums type 1 and type 2 five years ago. Tammi had obviously become much worse since your dx. My question is what are the symptoms of patients at the end of what seems to be the end. She has severe pressure on right side of chest, lower stomach area and back. She is eating less and in bed most of the time. Severe leg jerks and cramps. Thx Steve. I am trying to figure out a way to afford to take her to you for an appointment.
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Errica M.
1/4/2017 01:42:24 am
Dr. Herbst,
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Lind
3/1/2017 05:30:00 pm
Hi Erica,
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Gerilyn Stellema
3/22/2017 09:00:52 pm
Hello Dr. Herbst. I have had painful lumps all over my body for many years and have brought these to many doctors attention. My primary doc agreed to have a biopsy of a few of the painful lumps in 2011. These were lipomas I was told at the time "normal tissue" nothing to worry about, My health has progressively gotten worse since that biopsy. I have been diagnosed with hoshimotos, intercistial cystitis, chronic dry eye. I have protein c deficiency clotting disorder, high blood pressure, obstructive pulmonary desease, depression, anxiety, brain fog. I basically Feel pretty horrible most days. I have tried several diets. The most recent was a low carb, high protein diet, lost 43 lbs, but over the past 6 months have gained it back. I have been searching for something, a reason as to why I have all these problems. I finally found a link to your site and started reading. Finally I think I have a name for what is happening to me "Dercums desease" I printed some of this information and made an appointment with my primary who has seen the decline of my health, but had no answers. He read and totally agreed that it sounds like what I have. He said he would be willing to refer me wherever I should go for treatment, but other than you had no idea where to send me. I am located in Grand Rapids Michigan. Can you refer me to someone in Michigan or neighboring states or should I just make an appointment with your office and rob a bank to get the money to come see you. I am joking of course about the bank, but am really not in a financial situation to be able to afford the cost to go to Arizona. Although it seems that you are the only doctor I can see from my research that has a good knowledge of this desease. Please help me figure out what I should do. Thank you for your guidance.
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Sherry Barber
6/30/2018 05:33:43 am
Dr. Herbst. My doctor thinks I have dercums disease. I called you office a few days ago. I would like to talk to you about the disease if at all possible.
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Conor Gerrity
10/8/2018 11:45:40 am
Hey Dr. Herbst! I heard about your program and Arizona university (TREAT) I am 23 and I have had lipomas since I was 16. I’ve had a few removed but it seems like out of no where they are growing in numbers. I probably have close to 100 now. I was a heavy drinker but quit almost 2 years ago. And I have been focusing on cleaning my diet up and also trying keto. I am in pretty good shape, and don’t understand why my body is producing them. I know my dad, sister and brother have them to do it could be the familial lipoma thing. But there’s gotta be some underlying problem to cause a body to create tumors isn’t there? I’d love any advice, treatment, or news on experiments your working on! Some of these lumps hurt, but I’m really just scared of how I’m starting to look. Any help would be so appreciated!
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Christine Keenan
11/30/2018 10:17:41 pm
Dr.Herbst, I was able to see you and get diagnosed in 2009 with lipo-lymphedema, lipedema and Dercums. The Dercums has become more prominent and is now on my ribs to an extreme. It has made me feel as I’m having a heart attack and now am beginning to have trouble breathing. Any advice on what to do would be great.
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mary jane
3/22/2019 07:21:41 pm
I want to share my experience on how I was cured and free from DERCUMS Disease . I was infected with DERCUMS disease and all my hands and leg where swollen and I was living in pain. I went to so many hospital but the doctor told me that there is no possible cure for DERCUMS disease but I was giving so many drugs but they never work. I saw a testimony on how Dr ABAKA herbal mixture has help In curing people from so many disease including lipedema and I decided to contact him if he could help and he told me that he is going to help me get cured I believed him because I have read so much about him. Finally I got his herbal medicine and I used it for just one week and I was finally cured from DERCUMS diseases and all my swollen body was normal. Thanks to Dr ABAKA for restoring my health. If you are suffering from any diseases of any kind you can reach out to him and he will cure you permanently get in touch with him through his email drabaka99@gmail.com or whatsapp +2348147054320. He also cure HPV, herpes, diabetes, enterovirus, Zika virus, hanta virus, and any type of viruses.
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Julie Daniels
3/23/2019 07:48:02 am
I have had dercums for about 7 years now. It's from the top of my head down to my feet. I have a few areas that are worse with clusters of dercums than other places. Right now I'm dealing with a pinched nerve in my left arm and inflamation from heavy dercums in my arm shoulder and left back side. I don't know what the best medicines would be to help with a pinched nerve pain, that's what I call crazy pain is the pinched nerve. I'm using a topical inflammatory and and Tylenol and Advil. I have to choose between Advil and inflammatory prescription because I need help with pain. The doctor I saw yesterday wanted me to try the inflammatory cream instead of doing a prescription painkiller. And I don't go for the strongest ones. Can you give me any advice on what I could suggest to my doctor whenever I go back to see him as the one I went to see was not my regular doctor.
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mira emma
4/10/2019 08:41:12 pm
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Lee Scheeler
11/22/2020 01:23:16 am
Male, 42, non obese, chemically resistant masses, DD 30+ extraction surgeries (each 4 location average since 2017 ~monthly) recently on North Carolina SSI Medicaid. Need a pain management solution and surgeon in western NC (Clay Co) My private doctor in Atlanta is clearly no longer available and nobody out here has heard of DD let alone treated anyone.
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Marisol
4/24/2022 11:56:29 am
Hello,
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Destiny
3/6/2023 10:49:13 am
Hello I am a #7 year old female who has lived with chronic pain my entire life, as well as extreme fatigue. I had my first child at 28 and during that pregnancy my pain worsened I also gained 80 pounds without a signifigant increase in diet, it was during this time that symetrical lipomas (very painful) began to develop.
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AuthorKaren Herbst, a physician, educator and fat and lymphatic disease advocate Archives
July 2017
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